Tests are neg, son not regaining weight

[1tiredmama]

Other than chronic nausea with a 50lb weight loss (60lbs if you count 10 he gained and lost again) over 12 months and some bloodwork that points to Crohn's, my son has no signs of the disease. He has had upper and lower scopes, biopsies, and a CT scan of the small intestine--all surprisingly negative. This week, he goes for a gastric emptying scan.

Here's what I know so far.... My son gets backed up frequently. So many pictures over the last few years show lots of stool, but his GI doubts that alone accounts for such a dramatic weight loss. My son has GERD for which he is being treated. Whatever he has comes and goes with longer durations and increasing intensity.

My son has been able to eat for a couple of months now with only occasional, brief nausea. What is different this time is that he has not gained back more than 1lb. His torso looks okay, but his arms and legs are thin with little muscle mass. His arms are so thin that his elbows look knobby. No one on either side of the family has a skinny or lanky build. The men are all naturally muscular and strong. To me, he looks unhealthy. My other son, 2.5 years younger, is extremely muscular and weighs 30lbs more. I think there may be an absorption problem now.

What I don't understand is how everything keeps coming up negative. His doctor said that the negative CT scan makes Crohn's unlikely, but given the symptoms and abnormal bloodwork we still can't rule it out.

Any thoughts on malabsorption? Sick kid but negative tests? Chronic constipation?

I'm frustrated by the lack of a diagnosis of any kind. Something is definitely wrong. Where is the evidence hiding??? Grrr!!!

 

[Quackers]

I don't have much knowledge at all about this but I'd say to look into gastroparesis on the net and see what you think.

 

[CarolinAlaska]

Other than chronic nausea with a 50lb weight loss (60lbs if you count 10 he gained and lost again) over 12 months and some bloodwork that points to Crohn's, my son has no signs of the disease. He has had upper and lower scopes, biopsies, and a CT scan of the small intestine--all surprisingly negative. This week, he goes for a gastric emptying scan.

Here's what I know so far.... My son gets backed up frequently. So many pictures over the last few years show lots of stool, but his GI doubts that alone accounts for such a dramatic weight loss. My son has GERD for which he is being treated. Whatever he has comes and goes with longer durations and increasing intensity.

My son has been able to eat for a couple of months now with only occasional, brief nausea. What is different this time is that he has not gained back more than 1lb. His torso looks okay, but his arms and legs are thin with little muscle mass. His arms are so thin that his elbows look knobby. No one on either side of the family has a skinny or lanky build. The men are all naturally muscular and strong. To me, he looks unhealthy. My other son, 2.5 years younger, is extremely muscular and weighs 30lbs more. I think there may be an absorption problem now.

What I don't understand is how everything keeps coming up negative. His doctor said that the negative CT scan makes Crohn's unlikely, but given the symptoms and abnormal bloodwork we still can't rule it out.

Any thoughts on malabsorption? Sick kid but negative tests? Chronic constipation?

I'm frustrated by the lack of a diagnosis of any kind. Something is definitely wrong. Where is the evidence hiding??? Grrr!!!

My thought is that it's hiding in the small bowel. Failure to gain weight/maintain means malabsorption issues, and usually points to an issue in the small bowel. I've never heard of someone ruling out IBD with certainty with a CT scan. If that were the case, we'd have a lot fewer endoscopies. I also have concern that your doc even did a CT on a child with these kind of problems, when an MRI/MRE can give you as good of information without all the radiation. Are you seeing a peds GI?

My daughter had similar negative tests, but instead of a CT she had a negative MRE. They finally saw what was hiding when she did a video endoscopy (pill cam) that showed inflammation throughout the small bowel... Negative tests just mean keep looking - something is not clear yet, but it's hiding somewhere. Sorry whatever is so wrong with your son is being so elusive. <<Hugs>>

 

[my little penguin]

Yep lots of negative tests here.
Second the pill cam since many showed where the disease was hiding .
How old is your son ?

 

[Mehita]

Has he been tested for Celiac Disease? He sounds exactly like my son just prior to that diagnosis. Skin and bones and the same size as his little brother who is 4 years younger.

Along with the Celiac, his Crohns was hidden in his small intestine just out of the reach of the scopes. It took an MRE to find his stricture.

Just some food for thought...

 

[Jmrogers4]

I agree with small bowel, not a doctor but lack of growth/weight gain would make me think that.

We believe my son's Crohn's is also located in small bowel. We know for sure ileum, deudeom, esophagus but he did not grow or gain weight for 3 years after being diagnosed even though scopes recently showed no active disease in those places which means his maintenance med is working there. His GI believes that there is almost certainly Crohn's located in small intestine which would account for lack of absorbtion and therefore lack of weight gain/growth

We are awaiting insurance approval for pill cam, insurance doesn't want to pay since we just had scopes done and we have a diagnosis. I would think since you do not have diagnosis and still have symptoms it would be easier for insurance approval.

 

[1tiredmama]

Thank you for your responses. My son's biopsies and bloodwork were negative for Celiac. I think I can rule that out. He is 18 and under the care of a reputable peds GI. The doctor wanted to do an MRE, but because my son has Tourettes, he needs sedation for an MRI. The hospital staff could not guarantee getting the baruim into him, sedating him, and getting him into the machine on time. The CT scan was our Plan B. The pill cam could not be done until the scan ruled out a blockage. We see the doctor this week. I imagine the pill cam is next, but since my son is eating, I think the doctor may want to take a wait-and-see approach.

I am thinking the problem lies in the small bowel. A year ago, he regained some lost weight after a horrible bout. But after this last flare, he isn't regaining and I consider that a new symptom.

Thank you for the encouragement to keep looking. My son needed an ng tube for the CT scan. It was a terrible experience for him, made worse by the fact that we got no answers. We were both ready to give up after that.

 

[DanceMom]

Could he swallow a dummy pill before trying the capsule endoscopy? My daughter did have an MRE (which was questionable for thickening of the TI) but a dummy pill she swallowed just a few days ago passed with ease. We also tried the dummy pill (which dissolves if not passed) to make sure she could swallow such a large pill.

 

[xmdmom]

That much unintentional weight loss definitely has a cause of which Crohn's is one but there are lots of others. It is inconceivable to me that constipation could cause this.

What is your son's height and weight now? Has he been on any medications (which could be causing/contributing to nausea)? How does your son feel in general --does he have good energy? Do you know which blood tests point to Crohn's?

It is really difficult when you don't have the answers. Hope you'll have some clarity soon!

 

[Farmwife]

Keep pushing mom. Your doing a great jod for him.

 

[1tiredmama]

I don't have much knowledge at all about this but I'd say to look into gastroparesis on the net and see what you think.

Thank you, Quackers. I just did some research, and he does have symptoms of gastroparesis. I can't wait to see what the gastric emptying test shows.

 

[DustyKat]

I agree with pursuing tests of the small bowel and since the CT came up negative I would push for a dummy pillcam just to be on the safe side.

My daughter went undiagnosed and IBD wasn't on the radar so scopes were not done. However one week before emergency surgery she had a CT scan done with IV and oral contrast and it returned a grossly normal result. During that surgery she was found to have a ruptured and infarcted bowel. In the surgeons words her bowel and abdomen were a mess. That did not happen in one week and yet the CT showed no evidence of what was about to happen.

While ever your son's symptoms do not match what the tests are showing continue to push for answers.

Has he had blood tests for:

CRP & ESR (inflammatory markers)
B12
Folate
Iron Studies
Vit D
Zinc
Magnesium

Faecal Calprotectin (stool test for intestinal inflammation)

Some of the above tests may give some clue as whether malabsorption is present.

Ultrasound may also be worthwhile imaging tool.

Dusty. xxx

 

[Niks]

I agree with everyone else about investigating small bowel, and know how hard it is without a diagnosis!! My daughter had a negative CT scan, but is now under a new GI, who found several problems with the scan!!

She has been so poorly with mostly negative tests, she has got to the point where she really wanted to, and did on many occasions give up. Hang on in there and keep pushing!

Her new GI says her coeliac diagnosis is questionable and we are hopeful that he will keep investigating until we know what is wrong with her!! I hope you, like me take a little comfort in knowing there are other people out there having similar fights and sometimes things just don't come to light easily.

Good luck (((hugs)))

:ghug:

 

[got2bperfect]

Hi 1tiredmama,

I too am in the same position with my son. He's had some bloods that point to crohns but all else negative. He had an MRE instead of CT. We are currently waiting to have the pill cam which is booked in for April 9.

I'm hoping we get some answers. My son hasn't grown much at all in the last 9 months (he is almost 13) and his siblings are all now taller than him. (he's the eldest). He is also constantly fatigued which I feel is due to lack of absorbtion of nutrients he needs. I've luckily got one supportive ped and he thinks we should go ahead with the pill cam and said the MRE doesn't show everything.

I've done some research on the small intestine and it is three times as long as you are tall and its where all nutrients are absorbed that the body needs. It makes complete sense that if your child isn't putting on weight he's not getting the nutrients from the food that he needs to thrive. I know from reading posts from people on here the MRE and CT scans don't always show problems and miss some quite significant problems.

I would do the test. Its not going to hurt and it will help get a clearer picture of whats going on.